Tag Archives: UPenn

Cancer moves exponentially, starting slow as invisible mutated cells find homes (unlike in functional bodies where they are peed out into oblivion) and then the mass or masses take off like that hopeful snow shape in a palm

that suddenly emerges as an obvious ball worthy of throwing or further building towards a snowman’s torso.

My cancer went from delicate growth (September/October) to a small bound (today). The news comes on the heels of more daunting recoveries from my most recent treatments. My husband scurried from one futile effort to the next to bring me comfort this last cycle, his only reward my teary confession that I wasn’t sure I could continue this path. It felt too hard and, in fact, stupid.

Yesterday and today I feel good (yahoo!) but the news is the cancer is feeling good as well. It’s on the move.

Who to call? What to do? I rollback over my choices, as my personal doubts mount, and recall, “Oh yes, I had to play my big card back in June when the cancer surged so fast.” But I played that big card. The cancer continues to play its hand. My hand holds few backups outside of hoping that the waiting line for UPenn moves fast and that I qualify for a trial slot sooner rather than later (or never).

Decent

Uh Oh!

Last week, I wept at the thought of enduring the back-to-back-to-back-to-back chemo days required by the UPenn protocol – HOW COULD I FACE THAT after these unrelenting five months of aggressive treatments. Today I want to book my flight to Phillly, elbow my sisters off the line and demand the start.

What odd creatures we humans are; or is it bigger than humans this quest to live?

I recall my last dog, Tony, in significant decline as he aged. Was he 16, 18? I didn’t know but he and I partnered in life for 15 adventurous, full years. Then he was deaf, dumb and blind, increasingly incontinent and having micro strokes. His rapid decline timed poorly with my terminal diagnosis. I wasn’t feeling well positioned to pull the plug. I decided as long as his tail wagged, his life was worth living. His tail wagged.

The vet gave me pills a year prior when she diagnosed the micro-strokes and a litany of other poor health omens. She inferred that these could be given for pain management (he wasn’t showing pain) or, hint-hint, to bring things to a close. Oh! My! In July of 2012 strokes left him barely able to walk beyond small circles. He stopped eating or drinking. I gave him every form of permission possible to die and started the pills. He lived. I increased the dosing and another day passed. This was like some very bad, slow moving skit. One night I gave him all the remaining pills, said my deepest levels of goodbyes only to awaken to a living dog and a husband declaring, “we are going to the vet now.”

The vet euthanized Tony – outside, on a vast lawn, on a glorious day. Tony, to the end, resisted. The vet said this was typical of dogs. Now I wonder about me.

Diem Brown was one more reality star I would never have encountered if she wasn’t plagued by recurrent ovarian cancer in the years prior to her death this past weekend at age 32. Two things struck me, again. One, how vibrant she looked mere weeks before dying despite surgeries beyond imagination. We want the dying to give us the courtesy of looking the part. It is the only way we, the outsiders, conceive of what is going to happen next. And then her last tweet, defiant, forward looking despite the cancer having engulfed her body as she swears, “My doctors are seemingly giving up but I won’t & can’t rollover. Whatever option I have to LIVE I’m grabbing!”

I see this in my peers, regardless of age – at 82 and 32 – I see this commitment to life at all costs. And then there are the elegant exceptions. It’s a very big gray zone. Fighting vs. caving vs. bowing. Life is indeed a balancing act and the guidebooks rather vague.

“Enlightenment is always there. Small enlightenment will bring great enlightenment.” Thích Nhất Hạnh

This May 27th marks the close of my first year of blogging. I got into it by happenstance. Last May I was adjusting not only to entering the clinical trial at UPenn but also to the ambitious cross-country travel for this experimental treatment. I was hobbled by my first bout of bursitis. Not able to move, I explored the world of blogging until I had my own site. (Thank you, WordPress and Kim W.!)

The blog expanded the world I communicated with beyond the valiant friends and family listening in via my Caringbridge site to whoever might want to find me. I am still learning the value of tagging each post so that folks able to access the Internet, whether in Isle of Man, Belarus or Palestine, can find my Livingly Dying blog.

There have been 33,160 visits to the site and while 27,144 originated from within the United States, 6,019 came from another 101 countries.

I like to think the blog lessened other people’s isolation with disease. This blog certainly reduced my isolation. Thank you for the comments, insights and support. I also hope the blog championed the possibilities of clinical trials and immunology even as it offered an overly realistic glimpse at challenges of trial participation that required significant travel.

A year ago, paperwork was just signed making me officially in the trial. I awaited my Apherisis on May 22nd to gather the dendritic cells to combine with my harvested tumor for the kickoff vaccines the first week of June. The year was filled with the predictable highs and lows of a terminal cancer patient choosing an ambitious Hail Mary pass.

This week I officially enter an observation phase. It has already been two months since my last treatment and the deleterious effects of the drugs are waning. My ca-125 continues to rise and is now at its highest point since frontline treatment. What should trigger concern means less because I am an immunological experiment – and science is beginning to see that patients undergoing immunology don’t always have a steady or fast path towards cancer stability. Rather, my body might be learning, which is good, and part of that learning is mastering the skill of recognizing and then eliminating cancer as happens in a healthy body. For those who love to understand, watch this scientist-to-scientist video explaining the emerging breakthroughs of immunotherapy http://www.scientificamerican.com/article/wolchok-video-who-knew-cancer-has-an-off-switch-video/

I will not be retested for months – a thrilling release to enjoy my first break from treatment since I started this journey with metastatic cancer four years ago.

I intend year two of the Livingly Dying blog to focus on rebuilding and thriving as I work to extend my own break from treatment with expanded efforts in self-healing. If you have your own thoughts for what you would like to see more of on this site, please share.

It is with great relief and gratitude that I close out a year of arduous and, possibly, effective treatment treks from Oregon to Philadelphia for my recurrent stage iv ovarian cancer.

Cone of Happiness

I first arrived at UPenn’s Perelman Center for Advanced Medicine on April 4th, 2013. It had taken me twenty months to qualify for this tentative visit. Paperwork was signed on May 8th, Aphereisis #1 completed on May 22nd with my starting round of treatment June 5th and 6th of 2013. On March 12th and 13th 2014 I completed my 15th trek to Philly and my 11th round of treatment not knowing it would be my last. But it looks like that was my closing treatments for the part one of this clinical trial! Wow!

It’s been a complicated month since I lowered the Cone of Silence. It is never easy to interpret test results without the hands-on experts leading you and my great UPenn doc was gone until April 10th. The Internet told me a pericardial effusion was a bad sign. On April 17th, my doc could finally advise me from looking at the actual scans that the size of my effusion, a mere 1-2 cm of fluid around the heart, was not a concern. (Another probable side effect of Avistan.)

While waiting to understand my March test results, my body was increasingly crashing from the burdens of Avistan, a drug I knew I was set to go off, which tempered my complaints. What I did not expect was on April 10th UPenn offered that in lieu of dropping Avistan, they would give me a month off of treatment and add a day to my next proposed treatment cycle to determine if they could administer the Avistan. My heart dropped a little. I wasn’t sure I was up for more travel and more Avistan but I did not want to be cavalier about stopping participation in this trial given all that it has meant for extending my life.

Luckily, I had an appointment with my Oregon oncologist scheduled for the next day – my first visit to OHSU (Oregon Health Sciences University) in a year! As I biked to OHSU the next morning I found tears of joy on my face – it was wonderful to be enjoying a commute to my medical world. Entering OHSU-land (the largest employer in the city of Portland) I was awed by how affirming I find this community. I park my bike with hundreds of others. I get my free ticket for a jolly tram that arrives like a descending sculpture over my head and takes me to the top of the hill as if on an adventure versus a medical treadmill. It’s Tulip Sales Day so bright colored blooms are being sold for five dollars to support some good cause. My appointment is in the women’s center, which offers huge windows, a play area for children and adults on a wrap around balcony outside, all taking in the awesome view of mountains. Every moment at OSHU gentles the medical woes with positive possibilities. It is not so bad being sick amid a culture dedicated to hope and zest. Oh, I wanted to come home for treatment.

My appointment started early and my lovely, calm Doctor arrived with all my recent test results and said, “Wow, aren’t you doing great!” I explain that I have four vaccines left and she asserted before I have even biased her answer, “No, I think you are done. I think you have chosen a resolute and courageous path. You have gotten a lot of benefit and you will probably get no more.” I could have jumped in her lap and wept. Instead I listed my medical woes and she decisively attributed them all to Avistan, a drug she also believes in and dispenses often. But my body needs a break.

I await my two great docs deciding what is the proposed treatment plan for me here in Oregon. It is now my body’s turn to prove what it has learned from the Part One Autologous OC-DC Vaccines. I intend to cheer on my rebooted immune system in tracking down and eliminating new ovarian cancer cells. Or I may recur and get in line for a return to UPenn for the Part Two T Cell Infusion. I am fortunate to count down to either option.

May we build a world where all diseased people find they have positive options for getting diagnosed, finding treatment options and not being burdened with a payment plan. Thanks to this clinical trial, I might have a bit more time to contribute to that effort! Let’s add that to my to do list. much love, marcy

Since returning from my medical and holiday travels a few people have inquired, “So now, what is your status?” Ah, what a relevant question. Despite blogging, or maybe because of blogging, readers have been stuck on the same fast moving rollercoaster of highs, lows and plateaus as the patient, me. As we close out 2013, let me do my own little summary.

I close the year with apparent stability in my cancer. Stable is a very good word for a metastatic cancer patient living in treatment. Stable is my best bridge available to the next test results, especially given that I currently have some inconsistent results. Stable is a concept I intend to enjoy until the next round of internal tests in mid March.

Stability was my dream for 2012. That was a truly rocky year of new treatment regimes being met by new cancer growth, not a reality that can be sustained. A hard fought for surgery yielded better then anticipated results (bye-bye 10 cm of cancer) followed by a low dose chemo regime that finally reduced my remaining cancer bringing me to a start of 2013 where stability seemed possible.

2013 was a fairly easy year. I experienced the expertise and comforts of OHSU, enjoyed the easiest chemo protocol yet as I chipped away at the criteria to allow entry into the UPenn immunology trial. In early April a friend met me in Philadelphia for an intake visit that lead to my enrollment in the trial with treatment starting the first week of June 2013. Testing in January, May and September of 2013 was all relatively calm given the comforting lab results I was getting every three weeks. I was stable.

This fall, of course, began a rise in lab results and the pronouncement of new cancer and ascites (fluid in the pelvis) in the initial December scan, fast rectified by further scans and a lovely bit of holiday cheer. Who knows what is real?

I end 2013 ever aware that I reside on a cliff’s edge. I place my foot down with family and friends cheering me on and a stellar medical team leading the process. But it is my foot touching down on whatever loose rocks or solid earth is destined to be next. I could plummet or I could close out 2014 boringly stable. We all find out together.

A Happy New Year good luck marzipan pig!

I am proud I met my own goal to make 2013 a year I regained some sort of larger life. I focused on my Open Society Fellowship production of a how-to manual on organizing – the final completion date is this June. I was interviewed for a national magazine article covering creative approaches to community organizing. And, I started a blog called Livingly Dying that has had 17,827 visitors from 82 countries. I plan to continue these projects, tucked in meaningfully between the more mundane full time job of staying alive.

May my 2014 be a very, very long and stable year and may yours be whatever you seek.

Where are Jersey, Tobago and Ghana? Courtesy of Wikipedia I find answers.

A. Jersey is a British Crown dependency just off the coast of Normandy, France.

B. Tobago is located in the southern Caribbean, northeast of the island of Trinidad and southeast of Grenada.

C. Ghana, officially the Republic of Ghana, is a sovereign state and unitary presidential constitutional republic located on the Gulf of Guinea and Atlantic Ocean in the Africa frontier of Sub-Saharan Africa.

There are people impacted by cancer in each of these locations, not surprisingly, alas.

My accuracy in geography is weak. A shower curtain world map entertained me for years but I still failed to orient myself much better. It is a big world with almost 200 countries, shifting borders and new names. What I know is that everywhere on this globe matters, as does each individual. And that everywhere there is life there is also cancer.

I set up the blog LivinglyDying in June 2013 motivated to share my experiences participating in a Phase One clinical trial. The fact that it was an immunological trial at the top rated University of Pennsylvania with early promising results meant it was on the cutting edge of possible cancer breakthroughs. Ovarian Cancer has not seen a shift in its mortality statistics in 30 years – any breakthrough would be a big deal.

I did not enter this trial to be a good citizen. I entered it as my best bet for staying alive awhile longer. Such self-centered motivations did not mean I couldn’t ‘share the wealth’ by adding a public communication loop. I set up a blog during a week when acute hip bursitis had me able to do little. It was a distraction versus a well thought out new project.

I make an effort to post weekly, be modestly engaging and use different content angles to meet the varied interests of readers. Friends, family and colleagues were the first to enroll, motivated to track my progress. I wanted content to be good enough that they might share the link with other’s coping with mortality or cancer or just the wonders of life. As the tagline indicates, the blog promises “notes and essays on daily life with terminal cancer.”

I learned about blog culture and the excellent tools that WordPress provides so that innocents like myself can build a platform that is read. Little by little, I was found. (I am still waiting for The Post That Goes Viral to bring me instant fame as was so well made fun of on Showtime’s series The Big C. The truth is many, many people blog and many, many people buy lottery tickets – the odds of making it big are not in your favor.)

I stay mesmerized by my stats page which allows me to study not just the number of visitors and the different places on the site where they spend time but also which countries they call home and what entry points allow them to find LivinglyDying. I am often amused to find search terms like ‘Marcy Westerling’s Obituary’ as the connection to the blog. (Yesterday someone entered ovarian cancer party supplies and found the blog!) More common are search term entries like today’s query, ‘I am dying of cancer’.

Most of my visitors stumble upon the blog in desperation – they have received their own terminal diagnosis and they want to feel less isolated as they learn how to cope. People from 58 countries including Jersey, Tobago and Ghana have spent time on LivinglyDying. There have been over 13,000 visitors and while that still ranks me as a small potato blog, I hope that in the five months of my blogging visitors may have found some support and useful information.

Thank you for being readers, for spreading the word. If you are healthy, thank you for being brave enough to co-mingle with those that are not. For those consigned to this sorry path of terminal illness, thank you for reaching out and for suspecting, as I do, that there might be some magical power in being connected and in being emboldened by the notion that in 2013 we can be both terminal and quite lively and that maybe, just maybe we will see our illnesses become chronic versus terminal in our lifetimes, especially if we can make the world a little smaller, share our resources and make every person and every community counts.

October’s trek to Philly was hard, as I feared it might be. My initial treatment in this trial back in early June 2013 had been my most challenging and now I was returning after a 55-day break. My body might just resist fresh toxins being introduced with a loud “Hell No!”

I am now in the maintenance phase. I get the same chemo cocktail, at the same dose followed a day later by the same vaccines but now on a four-week schedule versus every three weeks. This sequence happens for three months and then I get tested to ensure there is no disease progression requiring redirection into Phase Two. I hope to do this maintenance phase for at least the nine months for which we have the needed material (my tumor to mix with my dendritic cells). But I also hope the next eight months are easier!

My flights presented some sleep challenges – I arrived at 2 a.m. I awoke again at 7 a.m., very little sleep for this delicate unit. The chemo infusion was full of delays. I returned back to my borrowed condo, crawling into bed at 7 p.m. feeling tired and off. I awoke at midnight to blinding head pain, stumbled to the bathroom and preceded to vomit for the next twelve relentless hours.

The Philadelphia Chamber of Commerce, no doubt, was glad when I finally left town. My walk through downtown for the next day’s treatment included stops for further retching. I like to imagine I cast an elegant figure in my red boots, stylish skirt, tucked behind a well-placed Canada Dry delivery truck, sitting on a planter wall, leaning over as if fascinated by some plant discovery quietly voiding my quite empty stomach. I didn’t linger to ask. Once semi-stable, I continued towards my final treatments of this visit.

The vaccines were a piece of cake, thank you. I felt too lousy to exert extra energy to tense up in anticipation of the needle’s journey. When I was officially done, the team decided to infuse me with saline to replenish my fluids making the long flights home less burdensome to my depleted system. Since I was all about sitting anywhere, another shift in a chemo lounge chair seemed most divine.

Trek number ten ended with me home in my own yummy bed by the early hours of the next day. It was all just fine. But no photos or extras for this post.

I was recently asked to pen this summary for an In Her Own Words column for the regional ovarian cancer newsletter (http://www.ovariancancerosw.org/). Since writing the summary was helpful for me, I thought it might also be helpful for readers of this blog to step back and look at the consolidated version of the arrival and survival with metastatic cancer. So here it goes…..

In my own words…..Marcy Westerling

At age 50, I was having a wonderful time and experiencing exciting work as a community organizer with a passion for justice. I had founded the Rural Organizing Project (ROP) in 1992.

Speaking against wars at home and abroad

My 50th year was all about transitions, the most exciting one having me take a leave from ROP as I accepted an Open Society Fellowship to advance my model of organizing at a national level. Then, in the spring of 2010 as I turned 51, my bliss was derailed by a Stage IV ovarian cancer diagnosis.

It started on my birthday with a vague feeling of heaviness. I wondered if the lovely cake family had made was proving too much for my system. The feeling didn’t lift and in subsequent days I mentioned a sense of someone sitting on my chest. Odd. I stayed active, but climbing slight hills on my bike required breathing tricks – it was like I was practicing being a woman in labor. A visit to the doctor led to a diagnosis of bronchitis, which didn’t make sense given how well I felt.

At the start of the appointment I mentioned that I also had intermittent stomach issues in recent months and I asked to talk about that too vs. waiting for the appointment I had made several months back to take place. They said, “No. Both your lungs and your stomach are big topics – you must choose one.” The appointment focused on my breathing. I had never before left a doctor’s office feeling silly.

In the next week my breathing became increasingly labored until I could no longer talk on the phone to make an appointment. That night I could barely climb the stairs to bed. I dreamt of an ambulance coming for me. The next morning my distressed sweetie found no argument as he drove me to urgent care.

Luckily, the doctor on duty was fantastic. Oxygen was given and x-rays were taken before he even completed my chart review. In a no drama way, he said I would need admittance to the hospital to figure out, “why the lung of a young, healthy, fit woman had collapsed.” He was so calm, so was I.

I texted friends as we commuted to the hospital thinking, “I’ll never again have such an exciting 15 minutes of medical fame.” I wanted everyone to know, “Marcy’s lung has collapsed!” It seemed cool.

The ER docs fast went from being comedic pals to sober workers as they narrowed the list of possible causes. They extracted two liters of amber fluid from my right chest, allowing immediate relief. I wouldn’t know until months later that that doctor told my friends in the hallway, “The situation looks grim.”

It would take a few exploratory surgeries and some false leads before I was officially informed on the side of the highway on April 22nd, 2010, I had some form of advanced metastasized cancer. For those who love drama, and the diagnosing of advanced cancer stories are always full of drama, details can be found in my short essay, The First Hello.

I have been in treatment since then. I often say, “I never went home after diagnosis.” Of course, I did but not really. My husband and I had laboriously and lovingly built the life we had wanted.

The happy couple 2009

It was based on the premise of staying alive and in good health. We lived in the woods with few neighbors. A half-acre pond was our front yard.

Our home at the pond

All around the pond were the orchards, animal pens and never ending year round beds for vegetables and flowers. We fed ourselves from what we harvested, sold eggs and imagined a small farm stand at the end of our driveway that would be the pension that neither of our cherished day jobs offered.

We loved our lives but with this diagnosis, I knew immediately any effort to stay alive would require building a new life – it would be in the city and it would include rigorous focus. My husband was more bereft than I at our loss. I had choice; he was along for the ride. Luckily, we live amid rich community and friends took over. They housed us in the city during frontline treatment, handling meals and facilitating decisions, allowing Mike and I to be dazed by the chaos of disease’s arrival.

By my last of six frontline chemotherapy treatments, my CA 125 was respectable and our move into our new city life was set. We started over. We built a life accepting the “new norm” and geared to bolstering my odds. They say that diagnosis via a collapsed lung means you have a ten % chance of surviving to two years.

I passed that marker in April of 2012 with little fanfare, as I was seven months into my first recurrence with my cancer far from tamed. An essay, Expiration Date, marked the occasion. That summer was especially hard as I experienced fairly extreme Doxil burns on my butt, hands and feet before being pulled off that chemo which had had minimal impact on my cancer. I coped by writing It’s A Dying Shame and some other essays. I started a support group across ages and diagnosis; it was for women wanting to talk about staring at mortality and also called It’s A Dying Shame.

I strive to embrace livingly dying, a phrase I credit to the late Christopher Hitchens even as I co-opt his language.This past November I did a reading at a coffee house of Livingly Dying essay excerpts and this September I travel to an Adirondacks retreat for a writer’s residency to decide where I might go next with the topic.

In April of 2013, twenty months after starting the qualification process, I transitioned from traditional treatment efforts to stabilize my cancer here in Oregon (OHSU) to a Phase One, Cohort Four immunology clinical trial at the University of Pennsylvania in Philadelphia. Quite a harrowing commute for medical care!

I had my official Phase One final treatment at the close of August. Odds are I will continue the commute for maintenance vaccines until I recur (and move to Phase Two) or run out of vaccine material in another year. But I await testing in late September and the resulting decisions. A great thing about treatment at Penn, though, is they don’t discard you from clinical trials if your disease progresses, the norm, they just adapt. I like that attitude. It matches what patients are forced to do.

Finding myself on the cutting edge of medical breakthroughs (or one more splendid failure), I decided to write a blog so that others seeking to prolong living with advanced cancer have easy access to my experience. It is called Livingly Dying – notes and essays on daily life with terminal cancer and if you like it, I hope you will spread the word to others. To date women from 45 countries have accessed the site.

Perhaps bartering my body for medical advances will grant me more time to find the sweet spots of living fully while terminally ill. While I stay saddened at how deeply interrupted my life was and how likely it is I will die younger than planned, I do marvel at how content Mike and I are with the life we rebuilt. We had a good life. We have a good life.

The happy couple 2012

Treatment Summary

Diagnosed: April 2010 Stage IV Ovarian Cancer – standard frontline therapy (Carbo/Taxol), optimally debulked, started parallel Phase Three clinical trial (BIBF 1120) in June 2010. Recurred: October 2011with multiple visible tumors in abdomen, started Gemzar/carbo. Carbo stopped in March 2012, Gemzar in April. CT Scans showed some tumors stabilizing while new tumors appeared. Started Doxil in May with Avistan added in June. Doxil stopped in August due to mixed CT scan and burns on hand, feet and butt. Surgery to remove easily available tumors set for early October – this was not technically a second debulking (because conventional wisdom of the time does not recommend them) but it did gather needed tumor for the Autologous OC-DC Vaccine Phase One trial I had been trying to enter for 12 months and gave me head start going back on chemo. Started low dose Taxol with Avistan in October 2012, which I stayed on until April 2013. Disease reduction with no new growth shown in January and May 2013 ct scans! My care transitioned to University of Pennsylvania with first treatment (Cytoxan, Avistan, Vaccines) of clinical trial June 5th and 6th 2013. My ca 125 has been at 7 since February 2013. (Unfortunately, I can have new cancer growing with a ca 125 of 13.)

The terrain of hope is rocky. My excitement to start the treatment phase sustained me through an uneventful flight from Oregon to Philadelphia. I went from plane to train to the hospital campus to meet an incoming candidate for dinner. Her medical intake had started that day at 9 a.m., making our date for 5:30 seem reasonable. She emailed a series of apologetic notes of delay finally being released from her day of screening tests at 6:15. I recognized her easily by the bandage showing where she had last been punctured. A shared meal of falafel from one of the many food carts was delightful as we exchanged information, motivations and snippets of life stories – cancer serving as the frame.

We bid goodnight and I began my two-mile walk towards my housing with regrettably over packed luggage. Hip and knee pain had me whispering ‘ouch’ with every step. The walk is wonderful, though. The first quarter crosses the smaller of the two rivers that encases downtown Philly. While crossing over the Schuylkill and the expanse of expressways paralleling the river there is an amazing view of down town, a striking skyline. At dusk there is a line up of folks taking photos. The next stretch is dense city, mixed residential and commerce, the standard three stories allowing peaks of the skyline on the left.

The following 7 blocks are not too exciting but then the street life starts accelerating. It is not a boring walk. Public art is everywhere. You can walk the same city block many times finding new things to admire between people watching, architecture and art. Murals dominate. As a quilter I am quick to note that the majority of quilts and murals are, frankly, not too exciting. In Philly I have yet to see a mural that has not met the mark for art. They tend to be three stories high and broad and from what I gather the Philly mural project has engaged a long-term team of artists to guide the community process for each site. The commitment to art and storytelling fuses brightly in Philadelphia.

In no time, I am at my own structure, juggling luggage, keys, and memory to get in the door, up the three flights and then, ‘Hello, roomie – I’m back!!!!”

June 5, 2013: The next morning I was to report in at 10 a.m. I was reluctant to end my long night of sleep – the bed felt too good. Twenty minutes before departure I got up forfeiting food shopping in favor of a quick shower. I should be done early enough to meet food needs. The walk was slow – my aching joints create a pacing that I am still not used to. Nonetheless, I arrived on time.

My handler was there by 10:05. The screening vial of blood was in motion by 10:15 but that would be the last thing on time for the day. Things started going awry. The person that normally did the physicals while patients were being prepped for the infusion was off. I needed to abandon my chemo post and relocate for the doctor. The doctor was busy. I was set in a typically dour examination room to wait and wait I did. After 15 minutes I opened the door to mitigate the stress of the confined space. After 30 minutes time started passing dramatically more slowly, then 45 minutes, then 60 minutes – tension settled in. I was now taking a roller-coaster plunge into the darker side of hope – despair. Why was I here? What life was this? I distracted myself by listing all the remaining things that could go wrong that day sidelining chemo, putting the scripted protocol off kilter and exiting me before even starting this foolish Phase One path.

The charm of the arriving doctor evened things out some. The exam was done in minutes, I was cleared for chemo and a new nurse sent me back to the chemo-waiting lounge. Like I knew where that was in this inner maze of the building. I stumbled back, unraveling. It was now past noon and it was clear that these accumulating delays meant that I needed to find food before I was strapped into my chair for god knows how many hours. I also needed to breathe a moment of fresh air of the delightful day outside if I was to regain calm.

I got a small bite to eat in the sunny warmth then reported back in only to be told, “sorry, there are computer problems preventing your clearance for chemo from showing up.” I convinced them to call me when the problem was resolved and ran outside. I found a patio that allowed me to stay close to my bank of elevators but enjoy a sense of normalcy. It would be ok, I kept assuring myself.

The call came clearing me and at 2:00 I was being seated in my chemo room. The next struggle presented itself. One of my infused drugs, a drug I hate and have had for over a year, would need to be infused over 90 minutes instead of 30 because they insisted on treating me as if I had never had it before. That was absurd. It was getting late. I challenged the edict requiring phone calls. Meanwhile the nurses were being sprightly in hearing me beg them to get my port accessed, start the pre-meds and leave me to the negotiations.

The nurses were wonderful and did their best to zip my infusions through but the mandated avistan drip speed from 30 to 90 minutes held firm because of the stupid research protocol. I hate rules based on weak footing. Someone showed a lack of imagination when crafting that section, and I lose another 60 minutes to hospital life. It adds up.

But protocols, once written, cannot be changed with ease. A research protocol risks termination with every change. I got to fume at what I experienced, which is genuinely frustrating, knowing when calmer that it is just the architecture of checks and balances within research. It is what you sign on to. Hope and frustration!

Infusion done, released, I delight at the smells of a tree in bloom. I breathe in life. Outside I am content, confined I agitate. Computer systems went down, the wrong people had a day off and the relentless rules that indicate you are the property of research combined to make my first infusion an all day affair. It was a beautiful day just as it was beautiful the day I flew. It’s summer, time to be outside but not for this research subject. I am relegated to the various benches for the permanently waiting.

Vaccine day – June 6, 2013: I trudged back to the research building. This day was cool and gray. Without the usual cushion of steroids infused with yesterday’s chemo, I felt gray as well. (Steroids are barred since they suppress the immune system and this trial is about building the patient up.) I had not experienced this level of exhaustion for quite a long time. Dressing that morning required breaks lying down.

The vaccines were a big moment, I had worked for 20 months to get to this point but having emotions was beyond me. I was too tired. I arrived to my waiting area the required 30 minutes early. The Paris Open on TV held my attention as I also tracked the room. Not many people, in fact just one other woman roughly my age quietly speaking with a friend. Hmmm. I peaked to see if she had the same envelope I did but nothing showed. The doctor came out saying, “Good, you are both here.” He graciously came over to me, the vaccine first-timer, to shake hands and assure me this would be easy. Then he took time with the other woman. As soon as he hurried out “to get things started,” we exchanged names and emails before we were whisked to our different rooms. She was the patient enrolled immediately prior to me, the second in our cohort. There was little time for other details as a parade was starting.

At the head was the ever-cheery Dr Tanyi, then support staff with coolers, clipboards, then rolling machines. We were told to get in line as we walked down a hall to a new section of rooms. The other woman urged me to go first knowing that first time jitters would only settle down once it was done. I was ushered into a tiny room now filled with parade participants plus some new folks. I didn’t know what to do until someone indicated that I should get in the bed. A bed, I hadn’t expected that. Given my exhaustion the sight was most welcome. I was shaking hands with old and new staff while trying to maintain some dignity as they all formed a tight, tight, tight semi-circle around me. (Think room as small as an elevator now including a bed, equipment and 8 people.) My lead nurse was holding a large syringe in the air. I make it my business never to look at needles but in this tiny room it loomed large. The other one must still be in the cooler.

I lay down, draped with a blanket as I scooted my skirt down. The doctor kept patting me saying, “This will be just fine, you’ll see” then quickly turning to a peer, narrating the process. She was being trained in, it turned out, to take over while Dr Tanyi was gone the next month. Damn, I don’t want her to be trained in on me! My undies were protected with napkins as goop was placed on my inner thighs. The ultrasound beeped to my right as we all waited for the radiologist to arrive. It was a long five minutes of trying to avoid looking at a needle held high – of trying to preside with grace as the centerpiece of the room. Radiologist in place, I fixated on the ultrasound screen wondering if we might find a baby but the search was for lymph nodes. “Ah”, I heard but I saw little amid the gray striated screen. When would the needle go in? Ouch, it was going in and that I could see on the screen. It was a slow process of everyone agreeing that it truly was in the lymph node and then that vaccination was done. Next side and it was now the doctor-in-trainings turn. I would have loved a sound bubble rather than hearing the list of do’s and don’ts as a much, much slower process started on my right. Was she in the node – were they really going to discuss this endlessly with the needle in me? Finally, the slightly more painful vaccination on the right was done.

The parade director put the sides up on my bed, and wheeled me from the vaccine room into another room for observation over the next hour. At 2:30, I was dismissed from the bed and faced five hours of walking around counting down until time to return for a blood draw. The weather had shifted with tropical storm Andrea arriving. I had a list of places to explore but my bag was heavy and I wanted to lie down. The University of Pennsylvania is a beautiful campus but there was no place comfortable for my post-chemo body for more than a few minutes. The temperature kept dropping. The clouds grew more ominous. I wanted a bed.

Eventually I got the 7:10 pm (protocol forgot to allow a window) blood draw and started my slog home in a drizzle wishing I hadn’t been so confident this morning that it wouldn’t rain. Home at 8, too tired to eat I went straight to bed sleeping until 9:30 the next morning. I awoke feeling better. In fact, my hip pain of April and May seemed gone. I was still tired with nausea but within acceptable limits. I relaxed with my roommate, packed then headed out for the final blood draw at 1:10 p.m. exactly. With all my luggage and tempestuous rains starting outdoors I grabbed the train to the airport. It was a direct flight home escaping just before the storm hit full force, arriving into the arms and care of my husband. Tired, nauseous but miraculously clear of hip pain – a benefit it seemed of the cytoxan chemo that, apparently, can be used for arthritis. My first treatment trek was done.

Monday (6.3.2013) dawned gray in Portland rather then kicking off the predicted suite of sunny days. The forecast had been revised overnight. I have yet to give up trying to control the weather, a habit I developed upon moving to the rainy part of the Pacific Northwest. The rain is fine, the gray can be gorgeous but my disposition is for sunny and warm – I never tire of it.

May weather was especially harsh to accept after a remarkably dry and blue-sky winter and spring. This May ended up being the third wettest on record. And cold. The nation suffered big weather turmoil while we just coped with the grumpiness of winter weather in spring. So yes, I counted down to my one sunny Oregon day before bidding goodbye to fly back to Philadelphia – more planes, airports and hospitals in store for me. The sun did sneak out albeit a few hours late. I thrilled in its arrival.

Between chores outside I toured the different nooks that make up our small urban homestead. I love to greet the flowers, their beauty deserving a small shout out. I am less outgoing with the vegetables and fruits, the exception being our young apple trees promising an actual crop this year. We moved to the city when I got my stage iv cancer diagnosis three years prior, leaving behind our dream farmstead with my flock of ducks and the ever expanding orchards and growing beds my husband fed us from. We planned to grow old there. We lost several dreams with the arrival of cancer.

I never really went home post diagnosis. Dear friends literally met us at the emergency room where doctors were puzzling out my collapsed lung. It would take a week for diagnosis but after removing liters of fluid from my chest, they whispered in the hall to these friends that, ‘there was never a good explanation for a collapsed lung.” We stayed with these friends that rocky April filled with all hours of trips to emergency rooms and then the pronouncement of terminal cancer. We stayed with them in an ad hoc guest room for the duration of front-line treatment. It insured care and laughter during a bewildering few months for my husband and me.

With the cancer diagnosis I committed to staying strong and for me that meant easy (aka biking) access to medical and complimentary care and, frankly, the busyness that a city offers. Depression seemed a secondary threat. It was time to say goodbye to the greater isolation and distances of country living.

Our new home, small and perfect with a decent allocation of land, steadily took on the shape of our revised dreams. Two vegetable beds were squeezed into the side yard, then three on the sidewalk meridian, two community plots acquired nearby and the expansion continues, a source of shared delight. I know every square foot of it very well.

Monday, soaking up the sun in preparation for my flight, I discovered a hidden treat. We had pruned out some trees blocking the southern sky last winter, now rewarding the effort was the most subtle and stunning iris blooming where a few trillium lounged months back. I took a photo to take with me on my travels.

I start this trek (Tuesday – 6.4.2013) with excitement. Finally, I begin the multi-day process of treatment in this phase one trial. A chemo cocktail of cytoxan and avistan day one, vaccines to the groin day two, and for this first cycle – blood draws every 12 hours for an additional day. Then home where I hope the sun and the iris will still be holding court.

I travel with Roxanne Cousins. She died earlier this year at age 40 leaving a young son to do his best with memories. Roxanne and I both worked hard to qualify for this trial, sharing notes and encouragement along the way. After surgery she was told that she didn’t have enough volume to meet the damn criteria. She was determined to try again; to get in this trial; to buy some more time with her loved ones. The cancer claimed her before another surgery could happen. I pledged to keep her spirit with me in a trial that is too early on to promise miracles but those of us with ovarian cancer just seek time extenders.

The Sunday N.Y.Times (6.2.2103) covered the interesting challenge of HIV patients in the U.S. once short tracked for death while often in their 20s and 30s, the miracle arrival of their own cocktail and the problems they now face of aging after decades on treatment. They featured one such man who was extremely close to death when the call came about ‘miracle pills.’ Within weeks he was gaining weight and mobility. Decades later, he lives. What a concept. Imagining that process occupied my mind. Of course, he couldn’t know it was a miracle at the time but must have considered it as a weak possibility. How long did it take him to accept this drastic change of fate? Could he ever revel? Does it matter?

What terminally ill person has not awaited a clarifying call in the months after diagnosis offering a reprieve? “So sorry, but you really have this other more benign calamity to contend with.” I met a woman who got such a call – it only changed her from a stage 3c to 2b but in the terrain of hope that is huge. With this trial I enter the terrain of hope.

I have now completed 3 visits to Philly – all equal parts pleasant and hard. It is crazy to commute cross-country for medical care. I *hope* that my next five visits to Philly, which all involve predictable treatment, will be easier then the prep visits filled with the uncertainty of passing criteria. But these are the delusions with which I pattern my life – not that such optimism does much harm.

Anyway, after three cross-country trips in a month and a half, the clinical trial physical prep work is done! My next visit the first week of June is for treatment – travel the 4th (sigh), chemo the 5th and vaccines the 6th. The first round I stay an extra 24 hours for observational blood work meaning that I travel home the night of the 7th. I have found April and May overwhelming with the travel tipping the scale.

I do feel relief to have to prep work done. The ‘dreaded apheresis’ was completed May 22nd at 2:30 pm. They only allow you a specific amount of time on the machine. I wanted to stay on longer to reach the high end of the goal of having had 15 liters of blood processed but the cut off time was marked with the arrival of the research staff to carry off the tiny bag of dendritic cells that go right to the lab for processing. Interestingly, I have since learned that the average female has 4.7 liters of blood in their body so the time is all circulating the same liters of blood to extract, extract, extract. My body generously allowed 13 liters to circulate, three more then the ten minimum needed. (As you can see, I do most research after undergoing the procedures but understanding a central line, I think I will avoid.)

Getting the central line was no fun. I relied on the information they provided that said it would be quick and uncomfortable versus painful. It is quick if you don’t count the serious prep time in the surgical outpatient wing and actual operating room. In some Merriam Webster dictionary way it might qualify as uncomfortable but in the real world of being lashed down to an operating table 2000 miles from home, it is a way creepy experience made more disconcerting when they need to abandon their initial plan of ‘vein preservation’ (a heartening concept) and reverse the operating room equipment to accommodate the ultrasound showing that there wasn’t any vein to preserve on my right side.

Two realities made the procedure harder. My email went down for twenty hours. Worse yet, I had grabbed the wrong charger so despite keeping my equipment off to maximize battery life, I had no juice by the morning of the procedure. My sister-in-law, driving 4 hours each way from upstate NY to provide support was bringing me a cord but we first had to find each other.

The plan had been to meet at the Apheresis Unit in the hospital to spare Peggy the chaos of tracking my complex morning moves through different buildings. But, of course, I needed her support at surgery. She figured that out (Peggy is incredibly competent and cheerful!) but she was only able to snag me as I exited with my central line installed. Within 30 seconds we were laughing and on our way to the waiting Apheresis Unit. (I could bore you with how to registration gal ‘lost’ my paperwork thus delaying the installation of the central line and increasing my tension but….you can imagine.)

Everything at the Apheresis Unit was easy. They know their stuff. The research team and they had interfaced perfectly. They have a very high staff to patient ratio. I had spent the week prior being perfect in what I put in my body. Peggy showed up like a salesperson for naked juices – one in every color, which I dutifully drank down. They opted (based on labs?) to infuse throughout different extras like calcium rather then waiting for possible mini-crisis’s. It was pleasant outside of the modest discomfort when talking and swallowing. I tried not to resent the window with the great view of downtown Philly in the sunshine being blocked by my bed. (Why do they do that?)

They informed me that I was extruding the perfect color of cells so that cheered me on. They knew I was flying out that night and did a lot of additional care to assure that would be fine. (Although it was not entirely confidence inducing when they packed a little post-care bag equipping me to staunch any blood flows and when I asked what I should do if I couldn’t stop the bleeding, they responded, “go to your nearest emergency room with your paperwork.” Hmmm….)

A mini-drama started two hours after boarding the plane. The weather in philly was wonderfully hot, my clothes were slight and my bandage was HUGE and mandated. I walk with a cane right now and always use a facemask in airports and planes as advised. My hat sports the cancer sucks button. I realized I looked worrisome both coming and going, as airport personnel stopped to ask if they ‘could help?’, I was escorted to the disabled line and wheelchairs were waiting for me at the close of every flight (I refused them but I did avail myself of the little trolleys for the first time.) So, I entered my first leg plane, as an obvious high need person. After the close of the first hour and a half on the tarmac, knowing I had a mere 45 minutes layover in Phoenix, I rang the call button, another first. The attendant came and I explained that I was a cancer patient returning from treatment and that I had a medical team in Philly and one in Portland but none in Phoenix and I did not want to spend the night in the Phoenix airport. They were vary accommodating but were clear on their limitations and gave me five minutes to mull if I wanted to deplane so I would be with one medical team. I was overwhelmed and knew that a. an off loaded passenger requires the re-inspection of all stored bags, a multi-hour delay and b. getting back to my host lodging was a decent undertaking for an exhausted person not allowed to carry anything for 24 hours and c. I wanted to get home. My seatmate, a man of roughly my age volunteered softly spoken council that would make any feminist proud. The flight crew was strong on encouraging if I had any discomfort I should deplane. I couldn’t have had better support. In the end, I decided to gamble that enough people now had my back that I would stay the course. The flight crew kept me posted, moved me to first class for the landing so I would be the first off, alerted the Portland flight and whisked me to the gate. The second plane landed only 10 minutes late. I was in bed with Mike at 3 am, 6 am philly time. What an amazing 24 hours in the pursuit of survival.

And all that night my sack of dendritic cells were in the lab growing into the marcy vaccine.

It is fun getting to know a new city. It helps that my guest accommodations are wonderfully situated for pretending I am on vacation. The condo is located on South Street near 12th – a central, fun, big city neighborhood. It is a row house befitting the city style and we are on the top, thus third floor. The terrace looks down on the street hubbub and this last trip, with bursitis limiting my movement, I adored leaning out over the block and creating storylines for the strangers I am getting to know through persistent observation. The extended family of three plus generations that runs the convenience store and seems to preside over the block – who parks where and when, with ample home cooked meals seeming to be the reward for following their rules. A nail salon and the day care center provide intermittent distractions that I am piecing together.

The lovely home setting complete with a warm host compliments the rigors of travel. Cross-country medical care may be nuts but amenities like these lull me into the pretense of being on vacation and, of course, you travel for that.

Onwards to more vacation the first week of June!

Warmly, marcy

p.s. snippets: I am finally noticing an abatement of my chemo induced shortness of breathe – yeah! I also greet the arrival of new hair filling in my scraggily scalp just in time for a possible new round of thinning as I start a new chemo drug with that side effect June 5th. I intend to return to full mobility in the next month or so. It’s been demoralizing to watch my chemo induced hip arthritis aggravate into acute bursitis but it too can be managed.

Welcome to a space dedicated to the process of livingly dying – staring at imminent mortality and yet residing in the world of the living. More and more of us are finding the words terminally ill and chronic illness co-mingle. We are living longer and better despite a dire diagnosis/prognosis. But the path is not easy.

We bounce between denial, deep despair, and sheer optimism. All the while, many of us face treatment regimes that whittle us down and a current culture in the United States unfamiliar with sitting with death and dying. These writings will be of most value for:

a. people navigating the balance of living when told you are dying

b. people pursuing creative approaches, especially those stimulating our immune systems to fight back the diseases trampling us

c. people interested in witnessing one person living each day with terminal illness.

Livingly Dying Essays, Clinical Trial & Creative Approaches, and Medical Industrial Complex Woes make up the three categories on the lower right column of the front page allowing you easy access to content that most interests you. To receive new posts click the follow button in the upper right column. I share my journey to support collective efforts to live well while dying. I am feeling my way out loud. Thank you for joining me. Comments are always welcome, in fact, they cheer on the process. If you scroll below this welcome, you will find the running narrative with most current post on top.

My ovarian cancer recurrence in October of 2011 condemned me to the predictable but somber reality of life in treatment. My care team and I selected the Penn trial as the hail mary pass best suited for me surviving longer in this reality. Frankly, there wasn’t an extensive menu of choices. Many other women reached the same conclusion creating a line of hopefuls since winnowed down by the ravages of this disease and hefty qualifications. This week, 19 months after starting the process, I signed the entry paperwork with very little fanfare.

The final countdown to entry allowed me the first moments to switch from ‘must get in’ mode to ‘holy shit, what the fuck am I doing’ mode. It hasn’t made the trial any less compelling, just made my ability to survive the rigors of cross-country medical care a concern. Anyone who knows me knows that I am the ultimate homebody. Additionally, I crave open windows and being outside. Airplanes, airports and hospitals are the worst form of punishment.

Now I consign my high holy months of summer and fall to endless air travel interrupted with endless hours in the hospital. Palliative care patients are counseled to select quality of life since quantity will elude us. The quality/quantity tradeoff is complicated by hope – might I get a bit more time by sacrificing my quality? A more amusing tradeoff is the irony of my lifelong politics prioritizing local solutions (before it was cool) and now I select the least local medical care possible.

I completed my second trek to Philly this week. In the eleventh hour I cancelled months of detailed planning that had me scheduled to stay east between the two May appointments. I got seriously ill at the end of April, which humbled my pretensions of strength – I bought a new roundtrip ticket with bad seats and high prices, as I needed to come home.

My relationship with the travel gods has always been tenuous. It’s like they pull out their most mechanically flawed planes when I show up. They fix them, which is nice, but not before hours are added to the journey. The Houston leg of my late night trek home included several hours circling the city to burn up enough fuel to allow a safe landing and plane change. I crawled into bed at 5:30 am Philly time – a long day by any standards and my standards are not normal.

A month in and I am learning my Philly landscape – who gives reliable answers, what will happen each visit, how to navigate the city and where I sleep. It’s a pleasant city that I have walked enough to feel oriented. My volunteer host is well situated and generous. More importantly she has windows that open! A tiny terrace!!! I can walk the two miles to my treatments!!! These details mean a lot.

For much of my treatment I have opted to go solo. Getting medical care is my new job and people go to their jobs unaccompanied. Furthermore, I hope to extend this into a marathon versus a sprint and that means rationing how I complicate other people’s lives. But I am now realizing there is a big difference between going solo a few miles from your home with a rolodex of allies willing to be on call as needed. In Philly, I am a true solo act. There is no back up plan. Yet.

Mike can’t stand not going with me but I remind him of the importance of some stability and normality in our lives. He serves as the safe harbor I throw my mind to as I miss my life. I visualize him living for the both of us. He is the person who tends my every need when I am home but we still have enough balance that he stays my lover not just my caregiver. He attends all decision-making appointments but that’s it. I draw lines. They help me cope. But I missed him horribly this last trek.

Luckily, Philly is a fun city just $8 by bolt bus from NYC and other settings. I hope to explore having an east coast care team that can break up the monotony and challenges of this trial so far from home. (Any takers out there?)

The apheresis is next on May 22nd. It’s the dreaded procedure where 10 liters’ of my blood will be removed then returned minus dendritic cells. It’s hard on any body and mine was fragile before I started three years of treatment. My sister-in-law is driving down from upstate NY to share her competence and cheer. I leave for the hospital at 6 am, with all my gear (100% roll-able because I cant carry anything afterwards.) My plane departs at 8 pm that night returning me home at the alleged hour of 4:30 am Philly time. A long day. But then the hardest part is done (hopefully to be re-done only one more time in September.)

The first week of June I return to Philly to start actual treatment – chemo one day, vaccines the next then observation then HOME for 3 weeks! I will learn how to master this trial, the travel and ways to keep this a journey I chose – one that need not just challenge my quality of life as I barter for more time.

I close by sharing the invaluable words of Susan Gubar a colleague in living with incurable ovarian cancer. She blogs about her journey at the NYTimes capturing so many of the complicated emotions and body issues that I face right now as she talks about her life in a clinical trial. I say, ‘ditto.’

People with incurable cancer do sometimes receive good news, as I have. Why is it harder for me to share good news than bad news? During treatment, good news produces elating highs, but also anxious lows.

When I entered a clinical trial for a new cancer drug, the consent form stated that the medication would not provide a cure and could kill me. The pills’ effects on my ovarian cancer were to be measured by the CA-125 blood test, in which numbers above 35 indicate disease growth.

I started the trial last August with a CA-125 over 100. As the number fell in the autumn to 38, in the winter to 9, and in the spring to 5, my morale rose – tempered by occasional dips and drops.

My family and friends are ecstatic. So is my oncologist, who wrote in an e-mail: “You do not even know how exciting it is to see the results of this new drug. I do a lot of clinical studies and I see so many negative results, some of which are fatal. We do all that work to get one rare patient who gets benefit … very rewarding to see it happening to my friend!”

The last two words of this message touched me to the quick. After four years, Dr. Matei had entered my heart and (apparently) I hers. A great joy to make a new friend at my age and in my situation, especially a friend so admired.

Yet I worry that I will fail her. A number that descended in the past nine months can ascend in the next nine months. (Overwhelming odds are it eventually will.) Might sharing good news jinx it — turn it, in the blink of an eye, into bad news?

I know from the nurse administrator of the trial that the experimental drug is not benefiting women with breast cancer. My good news makes me distressed about their bad news. Also, I had overheard conversations in the hospital waiting room about other ovarian cancer patients dropping out because of deleterious side effects, some of which I experience.

Weak from months of dosing, I cannot stand on my feet to cook for more than 10 minutes at a time. At the supermarket, I ogle ready-made meals. Changing the sheets on the bed requires time-outs. Filling the bird feeder, hauling it out, bringing it back in at night (so the squirrels can’t raid it) takes too much fortitude. Bones ache that I did not know I had. My hair has thinned so drastically that Joanne at the salon clipped it close to the scalp, all the while lambasting comb-overs.

Diminishing the cancer seems to involve depleting me. Still, I have kept my resolve steady by focusing on the satisfaction of contributing (if only in a minuscule way) to medical research. I had also kept myself on an even keel by hunkering down for the worst.

Now, with the best possible results, I am a neophyte who does not want to be an ingrate. My trepidation at the lowering cancer marker reminds me of the angst recounted by many patients at the end of a round of successful chemotherapy. The gift of time starts to feel like a present spoiled by uncertainty about the future. With cancer, you can’t win for losing.

Yet today I would rather be a cheerful Tigger than a gloomy Eeyore. So to buoy myself I decide to use the chicken stock defrosting in the fridge, its fat congealed on the top, to make matzo ball soup for my visiting daughter and son-in-law.

After I toss most of the fat, saving a tablespoon, I start whipping up the egg whites. But one of the rotary beaters of the electric mixer refuses to stay in its socket; it keeps falling out, no matter how I swivel it. I am here to testify that the gizmo works with only one beater. That, too, feels revitalizing, even though my low numbers and high spirits may have started to change on the day you read these words.

Tonight there will be homemade soup. Tomorrow I’ll put out the bird feeder and leave it out, despite the squirrels.

Preliminary trial results were released on Saturday to great fanfare. Here is an article for those who like details. xo marcy

Immune Therapy Offers Hope in Ovarian Cancer

By Michael Smith, North American Correspondent, MedPage Today

Published: April 07, 2013

Reviewed by Robert Jasmer, MD; Associate Clinical Professor of Medicine, University of California, San Francisco and Dorothy Caputo, MA, BSN, RN, Nurse Planner

Action Points

Note that this study was published as an abstract and presented at a conference. These data and conclusions should be considered to be preliminary until published in a peer-reviewed journal.

A novel two-step immunotherapy process appears to be effective in nearly three-fourths of women with advanced ovarian cancer when combined with chemotherapy.

The process begins with treatment with a personalized vaccine derived from the patient’s own dendritic cells and is followed by a second step, called adoptive T-cell therapy, in which immune cells are reinjected into patients after being removed, stimulated, and expanded in the laboratory.

WASHINGTON — A novel two-step immunotherapy process appears to be effective in nearly three-fourths of women with advanced ovarian cancer, a researcher said here.

The process begins with treatment with a personalized vaccine derived from the patient’s own dendritic cells, according to Lana Kandalaft, PharmD, PhD, of the University of Pennsylvania.

In 65% of 31 patients in a small nonrandomized trial, the vaccine alone led to either stable disease or partial response, Kandalaft told reporters at the annual meeting of the American Association for Cancer Research.

A subset of 11 patients went on to the second step of the process — called adoptive T-cell therapy — and 73% had what Kandalaft called a “clinical benefit” — either stable disease or a shrinking of the tumor.

Most patients with advanced ovarian cancer relapse within 2 years, she noted, and most die within 5 years. “There is definitely a vast unmet need for the development of novel, alternate therapies,” she said.

The process appears to offer new hope for patients with recurrent, progressive ovarian cancer, Kandalaft said, adding that some participants in the trial have had stable disease for several months.

Indeed, she said one woman, who had relapsed twice and had undergone three debulking surgeries before being given the dendritic cell vaccine, has now had 45 months of progression-free survival.

“To this day, she’s still in quite good condition,” she said.

The role of dendritic cells, she noted, is to act as “spies” — collecting information about potential targets and bringing the data back to the T cells, the “soldiers” that kill those targets.

In the study, Kandalaft and colleagues kept participants’ tumor cells alive after debulking surgery and then isolated dendritic cells through apheresis. The cells were exposed to tumor antigens and then injected into patients’ lymph nodes, along with intravenous bevacizumab (Avastin), over about 3 months.

In 20 of 31 patients, Kandalaft reported, the vaccine alone led to clinical benefit — 17 patients had stable disease and three had a partial response. The vaccination was well tolerated and elicited tumor-specific T-cell responses against various ovarian tumor antigens, with some patients experiencing prolonged progression-free survival.

The 11 patients who went on to the second stage of the process had their T cells removed, stimulated and expanded in the lab, and replaced in large numbers. The transfer amplified the antitumor immune response, Kandalaft reported, because the T cells had already been educated by the dendritic cell vaccine to attack tumor cells.

Of the 11 participants in the second stage, seven had stable disease and one had a complete remission, she said.

The study “shows that it’s now possible to devise very efficient and complex but feasible combination strategies (starting with) a vaccination that will basically point the immune system in the direction of the tumor,” commented Louis Weiner, MD, of Georgetown University here, who was not part of the study.

“And then you can further expand that response in a very productive and useful way through an adoptive transfer of activated T cells that have been educated to attack that particular set of antigens,” he told reporters.

Such a combination approach, he said, has the potential to “overcome some of the innate resistance mechanisms that cancers use.”

I got a taste of my possible new normal last week and it wasn’t bad. In fact, it felt a lot like my old normal, a life I did quite love. Facing mortality I am determined to enjoy whatever each day brings, but that attitude can belie a deeper truth of who I truly am and the life I would like to live. I like being engaged, busy, in the thick of things. I have adapted well to being ‘in the thick’ of life on the infusion ward and the acupuncture clinic but there is a bit of guise in that.The week, starting with last Saturday, March 30th, was BUSY. I knew it would be, so trying to ration my energy, I had even asked my dearest friend not to fly out for my birthday party (sigh) fearing a visit on top of big events would be too much. Even with Stephanie not joining us from Minneapolis, it was quite the gathering. People drove in from many directions to create such a mass that few individual conversations happened but oh what a mass of energy and fun – what you would hope for at a dance party.

The space was lovely, the weather beyond perfect, the host team award worthy and a cake that I never got to sample perhaps in an inadvertent boycott of the cutting into such a thing of beauty. The cake was massive and covered with the ‘best of’ photos of yours truly collaged artistically together.

I stayed on the dance floor and despite my fears that my lung capacity might reduce my ability to boogie, I did not return once to the designated ‘marcy rest throne’. It was wonderful dancing with so many dear friends. At the height of the evening some loud bangs erupted. Oops, the accumulated sound had detonated a few wine glasses. It was time to start winding down.

I had a day of rest before flying off to New York City. Two big east coast events had been foisted together without much ease. The first was a two-day conversation closing out a two-year thinking/action project on engaging the white working class in progressive identity. ROP was among four other groups to feature their work. It was a typical such gathering – 12 hour days, an expectation of your mind always being on.

A special needs person such as I is theoretically accommodated but there is only one size fits all participation. Sit up, stay engaged at the table and maybe, if you are determined, manage 8 hours of sleep. Day one, I functioned. Day two, I functioned. Day three, I functioned and I stopped holding my breath waiting for a glitch as my body rebelled. For five full days I functioned just like any other member of the working world. And I loved it. Luckily, I was able to manage quality food and exercise (there was no day that I walked less than five miles – god bless Manhattan.)

The formal meeting ended. I switched to family housing, slept a full 10 hours and had enormous support in the logistics of the second adventure. I awoke at a leisurely pace on Thursday to walk the 3 miles to Penn Station, train to Philly and exit the train to find the one and only Holly Pruett waiting at the top of the escalators prepared to snap a photo to document this moment – after 18 months we were going to walk to University of Pennsylvania in Philly for a medical appointment. We were finally here.

Holly apologized for her ‘wardrobe malfunction’ but I knew she was the perfectly attired companion for my assignment today to prove to UPenn that I am in ideal health. Holly looked young, fashionable and vital, loaning a definite edge to my efforts. She had clearly spent her proceeding 10 hours in Philly preparing to be a tour guide as we walked the mile from the train station to UPenn. If this was to be my new home, I should start learning about it. (Philly is the 5th largest US city, has five major sports teams and a superstitious relationship with where William Penn’s statue resides in the relative height of downtown Philly. There is more, much more, but we hope to have time to share the delights of Philly.)

In no time we were at the stunningly new, open design of the research wing, signed in and waiting for our appointment to start. Both Holly and I sighed with enormous relief when they acted like “yes, we are expecting you.” All the intake folks were like “really, you are traveling here from Oregon?” YES! WE ARE!!!!!!

The person we have negotiated with for 18 months was there in the flesh and blood. Everything started with hugs. The repeating of information, often having a flash of panic, ‘wait, could sharing this disqualify me?’ Meeting the doctor in charge, Dr Tanyi, who like my new OHSU doctor, is both brilliant and communicating to me through a Slavic accent that I have yet to master. With great energy he reviewed the theory behind the TWO (who knew) clinical trials that I was being screened for. Between needing to remind myself ‘I am truly sitting here’ and the accent, even with my great familiarity with the trial theory I know I missed details.

After the physical exam, he declared me an ‘optimal candidate’, posed for a group photo and left us to meet the project lead and work out the details like the dates for my formal signing of paperwork (May 8th), apheresis/dialysis (May 22nd) and the first vaccines over the three days of June 4th, 5th and 6th with subsequent vaccines every three weeks thereafter until I decide to stop, we run out of my tumor or the cancer grows.

I arrived home after midnight last night. I am thrilled to be home and ever hopeful that by choosing to loan my body to the frontier of medical research forward steps will be made in taming ovarian cancer and extending my own life. Formal signing of paperwork will not happen until May 8th but there is every reason to belief that, courtesy of many, I will be enrolled in the Phase One, cohort four arm of this trial. Let’s keep our fingers crossed for just a little longer.

For weeks and longer I have tried to draft an update that serves the purpose of sharing information. I have started many. They all languish for tone. They sound woeful and yet I write during a positive moment – I might be getting a second remission. Another remission was not very likely given this last 17 months of treatment failures. Remission does sound great. It is also hard to see it as more than a short break between treatment. My body and I are very, very tired of constant treatment so a break is not to be sneered at. My body and I are also tired of the constant suspense. Between bi-monthly blood tests and the ongoing lurching steps towards the UPenn trial, what happens next hides behind curtains that I do not get to chose.

I should be shouting out good news but really I am calculating the best way to get through the day. What are the top three side effects that I must fixate on tempering? I won’t list the options.

My orientation is towards planning, micro-planning perhaps. I have adapted to many aspects of my new terrain, this staring at mortality, but I find living with imminent death somewhere between the biggest uncertainty and a reality far too certain. It sucks for planning around. So then I fixate on the established treatment schedule, trivializing the point of treatment by feeling entitled to dates being met when in fact disease stability is the only real goal (and then extending and extending that stability). Of course my treatment plan changes to match my needs. But I hate how it ruins my carefully re-calculated plans again!

Friends, ever-loyal-beyond-belief friends, take over the planning details so that I have less reason to obsess. I focus on adapting to the new truths. I can’t tell you how many times my graduation date from this chemo regimen has changed. Most recently, after a tough week of accumulating side effects it seems that I might not go additional ‘extra’ rounds of this regimen but that wont be determined until March 28th, the same date as I am schedule for another chemo round – whatever. I will arrive packed for the decision we make.

Most of the time I just wonder as I live a life of such low bars. My days are a sequence of very, very small triumphs. And it is so many months now of trying to fashion this into a life.

I mange to get to weekly chemo, fast for 36 hours around each infusion, make it to my acupuncture appointments twice per week, exercise daily and not much more. I have idle hours. I sit and play at the iPad, read and think of the next tiny task I will attempt – maybe it’s sweep one floor or gather laundry. It is never as complicated as ‘do laundry’ because that is now a concept that needs to get broken in to component parts often over days.

I have mentioned my determination that 2013 would be the year I focused on living and returning to my old passions. And I have. It has exhausted me. It also derailed the writing projects I started. This girl-living-on- chemo seems only able to mange so much. Mike and I did attend the first national Anti-Fracking Summit in Texas in early March. The passion and determination in the room were fantastic as was our session on rural organizing. I continue to advise some of these new contacts as they work on the ground in rural america. Texas was great and yet how hard for me. I got sick and it highlighted the reality of being disabled in a fast moving world. One terminal friend inquired, “Is it too much, these attempts at being part of your old life?” Maybe, and it makes me sad.

I limp around an intersection between malaise and treatment-induced-exhaustion. It is a quiet place, fraught with intentions not to be realized any time soon. My forays just prove the point. But despite my disappointments at how hard a front line role in organizing stays for me restricted to cancerland, behind the scenes I continue to advise and be valued and I am grateful for this role.

The UPenn update is despite their ongoing delays, Holly and I are showing up on April 4th for a pre-screening since the actually screening can’t happen until their vaccine making building setup is expanded. Hopefully, my real screening will happen May 8th with the final vaccine making step taking place on May 22nd when they pull out and return my white blood cells to combine with the rest of the materials they have been prepping from my tumor removed back in October 2012. If those dates happen, I would receive the vaccine three weeks later – a date carefully calibrated to be within a window as well as on a day when only one other woman in the the trial gets her vaccine, since the FDA won’t allow more then two women to be treated a day during this highly experimental phase. Each injection needs to be timed for when a radiologist can use equipment to guide the vaccine to the selected groin lymph node.

This is not how I wanted to spend my summer, in planes travelling to and fro. Marcy the planner, had mapped this out quite well to be a winter activity. My entire adult life had been about building the life I wanted. And I did. This cancer phase is about enduring little control and still figuring out how to thrive. (Grrrrr….) And remember up until my formal screening, I can be disqualified for a roster of possibilities.

And ergo the party. What better time for a party then as a counterweight to my 3rd cancerversary – a time of reflection on the losses, new reality and being alive still. Spring is swelling around us. The passage into this new season assures we are all still here – living and building the best life we can. It is good, wonderful quite often, and yes, hard for all of us as well. A party is a chance to pause with the positive. Attending a dance party doesn’t mean YOU need to dance but that you will be in a room pulsing with the beats of life and a live dj that knows how to get your toes tapping from whatever corner you find yourself. Good food, good people. Me celebrating a birthday that, alas, is a triumph to realize. Yes, a party is a good thing. I very much hope to see you there.

Come Join Us!

Marcy’s (Birthday) Dance Party – live DJ

Saturday, March 30th, 2013

7:30-10:30 pm

“Joy is the simplest form of gratitude.” ~ Karl Barth

Join together in gratitude for Marcy’s 54th birthday and the community that sustains us all.

Only for those who like details. This gives you a sense of why it has taken me 15 months to get this close to being admitted. Everyone wants in because of their reputation on being on the front lines of extending lives of cancer patients.

PHILADELPHIA — Most ovarian cancer patients are diagnosed with late stage disease that is unresponsive to existing therapies. In a new study, researchers from the Perelman School of Medicine at the University of Pennsylvania School of Medicine show that a two-step personalized immunotherapy treatment — a dendritic cell vaccine using patients’ own tumor followed by adoptive T cell therapy — triggers anti-tumor immune responses in these type of patients. Four of the six patients treated in the trial responded to the therapy, the investigators report this month in OncoImmunology.

“What we proved in this study is that this is a safe treatment strategy,” says co-first author Lana Kandalaft, PharmD, MTR, PhD, research assistant professor of Obstetrics and Gynecology and director of clinical development in the Ovarian Cancer Research Center. “It is a walk in the park for patients, especially compared to standard chemotherapies and surgical treatments for ovarian cancer – literally, some patients left the clinic and went for a walk in a nearby park after their treatment.”

The findings follow research by the study’s senior author, George Coukos, MD, PhD, director of the Ovarian Cancer Research Center at Penn, who showed in 2003 that women whose ovarian tumors were infiltrated by healthy immune cells, called T cells, tended to live longer than women whose tumors were devoid of T cells. That observation and other subsequent ones suggest the patient’s immune system is trying to fight off the disease but can’t quite muster the strength to beat it. Therefore, investigators have been trying to find ways using patients’ own tumor cells to boost the immune system’s power.

In the current study, Coukos, Kandalaft, co-first author Daniel J. Powell Jr., PhD, research assistant professor of Pathology and Laboratory Medicine, and colleagues treated six women with advanced ovarian cancer in a two-staged immunotherapy protocol in which they utilized a dendritic cell vaccine created from tissue in the patients’ own tumor, which was stored at time of surgery. All of these women’s cancers had progressed on standard of care chemotherapy.

In the first segment of the study, the team prepared an individualized dendritic cell vaccine for each patient. They harvested dendritic cells from each patient using apheresis, the same process volunteers go through when they donate platelets or other blood products such as those collected for stem cell transplants. Kandalaft and colleagues then exposed each patient’s dendritic cells to tumor extract produced from the woman’s own tumor, which teaches the dendritic cells who the enemy is. After this priming, the investigators vaccinated each patient with her own dendritic cells and gave them a combination chemotherapy regimen of bevacizumab and cyclophosphamide. Because dendritic cells are like the generals of the immune system, they then induce other immune cells to take up the fight.

Of the six patients who received the dendritic cell vaccine, four developed an anti-tumor immune response, indicating that the approach was working. One of those patients had no measurable disease at study entry because all of it had been successfully removed during surgery. She remains in remission today, 42 months following vaccine treatment. The other three who had an immune response to the vaccine still had residual disease and went on to the second segment of treatment.

The team harvested T cells from each of these three women. Using a technique developed at Penn, they grew the cells in the laboratory, expanding their numbers exponentially, and then reintroduced them into each patient after she underwent a lymphodepleting chemotherapy regimen. Because the T cells had already been trained by the dendritic cell vaccine to attack the tumor cells, the adoptive T cell transfer amplifies the anti-tumor immune response.

Two of the women showed a restored immune response after the T cell transfer. One of the women continued to have stable disease, whereas the other had a complete response to the therapy.

The researchers say it is too early to say whether this type of therapy will be effective in a large number of ovarian cancer patients, but the early results are promising. First, and foremost, she notes, the two-step approach appears safe and well tolerated by the patients. Additionally, the team saw a correlation in both treatment steps between immune responses and clinical benefit, suggesting that it is, in fact, the immune response that is holding the disease in check.

With these encouraging results in hand, the team has opened a larger trial in which they have already enrolled about 25 women and aim for up to 30 more. The new protocol uses an improved vaccine platform and an optimized adoptive T cell transfer protocol. The PI of this study is Janos Tanyi, MD, PhD.

“Large clinical trials have shown that intensifying chemotherapy doesn’t improve outcomes for women with advanced ovarian cancer,” Coukos says. “So we need to explore other avenues. We think the combinatorial approach of both immune and chemotherapy is the way to go.”

The Perelman School of Medicine is currently ranked #2 in U.S. News & World Report’s survey of research-oriented medical schools. The School is consistently among the nation’s top recipients of funding from the National Institutes of Health, with $479.3 million awarded in the 2011 fiscal year.

The University of Pennsylvania Health System’s patient care facilities include: The Hospital of the University of Pennsylvania — recognized as one of the nation’s top “Honor Roll” hospitals by U.S. News & World Report; Penn Presbyterian Medical Center; and Pennsylvania Hospital — the nation’s first hospital, founded in 1751. Penn Medicine also includes additional patient care facilities and services throughout the Philadelphia region.

Penn Medicine is committed to improving lives and health through a variety of community-based programs and activities. In fiscal year 2011, Penn Medicine provided $854 million to benefit our community.

It’s been a roller coaster few weeks. First my ct scan came back with new signs of disease progression on August 14th. I have had a year of these dour ct scans now but each additional period of disease growth has worse implications. My oncologist closed our August meeting by recommending that we pursue our top choice (and only choice) clinical trial at UPenn for a vaccine made from my own cells. We had been working on qualifying me for this since last November but it is a Phase 1 trial (riskier and thus harder to get into but you are also guaranteed the treatment being tested.) And surgery is required. We had been turned down from surgery as an option last November based on little likelihood of gathering enough vaccine material and too much risk. The current thinking is that you do not do repeat surgery on patients like me who recurred fast and have multiple cancer sites. Anecdotally, all the women I know who have significantly outlived their prognosis have been multiply de-bulked (eg surgery), many over 5 times. I was all in favor of surgery under any terms. What we did not expect was our surgeon also to agree to the surgery that he denied in November. He said that a tumor was now ‘easily harvestable’ and of clear size to meet the study criteria. He was also painfully clear that he would do no other cancer clean up while inside because of the current wisdom that it is more risky then productive. But Surgeon Cappuchini, like my oncologist Dr Mashru, agreed that at this point in time proceeding towards this clinical trial made best sense.

Wow – I was suddenly approved for surgery! I was quite happy (despite Mike having serious doubts.)

But the devil was in the details. A team needed to be lined up to handle the removed live tumor to then head to UPenn for assessment as I continued with next steps for qualifying for their vaccine trial. In order to get a complicated, fragile kit delivered to Kaiser many people needed to sign off and each one of them balked and sent out alerts. Who was this to be billed to? (Which Kaiser research graciously agreed to cover.) Who was responsible? By then too many people were involved making liability a new issue. As people needed to sign off formally they were reluctant to be seen as going against current surgical wisdom (no surgery just to qualify me for a trail – regardless that that surgery would also remove my largest and least responsive to chemo tumor.) Everyone said ‘don’t ask me to sign off, ask him’ until we were stuck in an endless loop – a week plus of this.

No one messed up. Everyone did their job. Everyone stuck to the letter of the current rules. Alas, where did that leave me – the fucking patient who is not always served well by these rules. Only they are protected from liability. I am stage iv recurrent ovarian cancer. The only accepted medical option for me is chemotherapy. I am now medically labeled a ‘chemo failure’. There are other chemos to try and I will but in 2 1/2 years my body has shown an incredible ability to nurture cancer while on chemotherapy. This is why women like me do not survive 5 years.

I would prefer a medical system with some waivers that allow informed patients to proceed. I have spent nine months understanding why the clinical trial at UPenn is my best current hope. My medical team agreed after a year of trying other options. I am not trying to waste precious funds or resources. By participating in trails I use my body as a foil for other women while hoping to buy time for myself. Alas, this route pursued with tremendous hours, heart and research was denied me yesterday morning. It seemed final. We were done pushing. And then, a wacky phone call came in to set me up for surgery next Tuesday, September 18th. The surgeon had chosen to take on liability. I have cursed this surgeon many a time for his gruff bedside manner in which he overly details why I am the rare woman he cannot save. I have heard him deliver this 20 minute spiel three times now. It is a bummer to listen to. But he signed off on the surgery that we had finally hit a dead end on. Thank you, Dr Fabio Cappuchini.

I have been off chemo for more then a month to allow my body a break, time to get a tooth extracted and now this abdominal surgery. Surgery should happen next Tuesday. We wont know until after surgery how involved it ends up being. They will start laproscopically (blowing my belly up to the size of a woman carrying full term triplets) but they believe that they will probably have to convert to an abdominal open due to the positioning (deep inside) of the target tumor and its size. The abdominal open will require more time in the hospital and complete rest but either option keeps me needing to recover much of the next month but hopefully I will return to my new chemo regime of weekly taxol plus avistan by late September.

It’s been a messy, stressful month. To top it off my letter welcoming to Medicare got ‘lost’ and I officially started September 1st when I had understood it as October 1st – this matters a great deal when you are negotiating tricky surgery. And looking at needing to close out your 25 year health care through Kaiser Permanente (a secret) and navigate the new options via Medicare and pulling together a brand new team….maybe that fun saga will get detailed another time.

Throughout this month an incredible and expanded team of volunteers were tasked in working groups to assist with different levels of negotiations. A shout out to each and every one of you.

The amazing result is that after 9 months of trying to position me for the best best clinical trial nationally if not internationally I am having surgery to move me forward in to acceptance at the UPenn research scene. This is less a magic wand then a hail mary pass. But I truly believe that as we now try to get me past the very dicey 5 year survival mark (having past the 90% chance that I would not make it two years!), we have just inched me to a position of actual confidence in the possibility that we will have a big old 5 year survival party in April of 2015. You, of course, are invited! Thanks for cheering me on. much love, marcy